RE: Re: Did anyone ever try NO medications for seizures?

[Guest guest]

,

I envy your degree in neuroscience!! My PhD is in history, and that hasn't

helped much with the whole PMG thing! ( : Below, I have responded to your

various questions....feel free to email me directly at theasprague@..., too.

So, no polypharmacy has worked? and if not, is your son a candidate for the

ketogenic diet? I believe families can go down and get trained at s Hopkins

on how to do this, implementation, etc. Have you guys tried Vigabitrin? what

kind of seizures is your son having?

In terms of the VNS, your son is a bit young. But you could always meet with

your local VNS rep, talk to your son's neuro, and figure out when would be a

good time....

We work, long distance, with Dr. Elliott Sherr at UCSF. He's brilliant.

The person who runs epilepsy.com, Warren Lammert, knows a ton about pediatric

epilepsy refractory to medication. Perhaps check out that site, and email him

from there?

If you are going to wean him down, and clear out his system, of course always

keep emergency diastat on hand, in case of status epilepticus. Since the brain

is so unprotected around sleep, you might also want to purchase one of those

seizure detecting mattress pads, pehaps a pulse/ox monitor, etc. due to SUDEP.

Is deep brain stim the method using magnets? Perhaps there are clinical trials

you could get in on?

There are alternative methods. There is a book written by our daughter's

epileptologist, who is with NYU, that I would recommend. His name is Orrin

Devinsky. If you look for it on amazon, you should be able to find it.

I feel for you. We are also very frustrated. My daughter is 7, and on A LOT of

Lamictal, which had been working, and now she's having breakthroughs.

Good luck!

Thea in NY

Re: Did anyone ever try NO medications for seizures?

Thanks for your responses. Just to be clear, I would never take away his

medication cold turkey, or without the supervision of his neurologist. I think

we are seeing one of the best neurologists out there - Dr. ph Sullivan, the

head of the pediatric epilepsy unit at UCSF.

I'm just so incredibly frustrated with the medications. On top of not working to

stop the seizures, they've made Ben's life miserable. The side effects have

been, at various times in his short 2 year life: months of 3 hour-long

inconsolable crying jags, loss of appetite (which almost resulted in a feeding

tube because he became so thin), lethargy and loss of muscle coordination,

inability to focus his eyes (he looked like he was on speed), concerns about his

liver function.

To give you some background, I have a PhD in neuroscience and I understand what

these drugs do to the brain. Giving my baby all of these drug cocktails during

the first 2 years of his life has affected his development. I know that the

brain develops differently on drugs than not on drugs. To be sure, the same can

be said of the developing brain on seizures. But there seems to be no positive

payoff to subjecting him to the drugs. We have no choice regarding his PMG, but

I feel like I do have a choice in whether or not to use the drugs.

I need another alternative. What about VNS? I've read some posts here that

talk about VNS implants that DIDN'T work. Has anyone had a positive experience?

I've also heard that deep brain stimulation is undergoing clincial trials - has

anyone's doctor mentioned that? Is the anything else that I haven't heard of?

>

> Hi All,

> Our son has been on about 8 different anti-seizure medications since he was

3.5 months old (he's now almost 2). None have worked. All have come with

various negative side effects. I'm thinking of trying to just let him be. He's

had such a tough time on the medications - and continued to have seizures daily

anyway - why keep putting him through these trials? We are running out of

medication options anyway. So my question is, has anyone else ever tried a

drug-free period for their child? Of course I'm very afraid that the seizures

could get worse. He's currently on Lamictal, and having anywhere from 3-5

seizures a day. He cries a lot on Lamictal and we can't figure out what is

hurting him. So we feel like the Lamictal is not worth it. Any thoughts?

> Thanks,

>

>

[Guest guest]

,

My daughter is 14, and we just started treating at the Cleveland Clinic.  Our

doctor has not even mentioned VNS for us (because my daughter suddenly went into

subclinical status). She currently uses Lamictal and Vimpat.  We haven't

noticed side effects of Lamictal - but she does constantly complain of stomach

pain.  We have not found a cause, and have ruled out all the obvious suspects.

 

We have failed 8 meds, and are currently exploring brain surgery.  Keto wasn't

an option for us, as her epilepsy was controlled until she was 10.  The change

would have been WAY too much for her.

Could his crying spells just be 2 year old growth spurts?  Or, are you sure

that they are related to the meds?

R. Holman

PADI OWSI #193832

Subject: Re: Did anyone ever try NO medications for seizures?

To: polymicrogyria

Date: Wednesday, April 13, 2011, 4:15 PM

 

Thank for all of those suggestions, Thea! I really appreciate it. We've

tried Vigabatrin and the ketogenic diet. Both didn't work. I'll look for the

book by Orrin Devinsky. He's also currently on Lamictal and since we started

this drug he's had these long crying spells where he is completely inconsolable.

He writhes around like he's in pain, but we cannot figure out what it could be.

Has your daughter had any pain on Lamictal? Our neurologist would consider the

VNS at Ben's age - he just needs to have the wire in a coil so that as he grows

it can extend. But I've only heard of malfuctioning VNS implants on this group

so I'm not too optimistic - although Warren Lammert (whom you mention from

epilepsy.com) is a big proponent of VNS.

Thanks again Thea, and I hope your daughter stops having those breakthrough

seizures. As hard as it is to live with seizures, I can imagine it's incredibly

hard to have them pop up again after being controlled for some time.

All the best,

> >

> > Hi All,

> > Our son has been on about 8 different anti-seizure medications since he was

3.5 months old (he's now almost 2). None have worked. All have come with

various negative side effects. I'm thinking of trying to just let him be. He's

had such a tough time on the medications - and continued to have seizures daily

anyway - why keep putting him through these trials? We are running out of

medication options anyway. So my question is, has anyone else ever tried a

drug-free period for their child? Of course I'm very afraid that the seizures

could get worse. He's currently on Lamictal, and having anywhere from 3-5

seizures a day. He cries a lot on Lamictal and we can't figure out what is

hurting him. So we feel like the Lamictal is not worth it. Any thoughts?

> > Thanks,

> >

> >

>

>

>

>

>

>

>

>

>

>

[Guest guest]

,

My granddaugther has been treating with no meds, but she has no seizures, as far

as we can see....she`s 5,5 and has slight PMG on right and is non verbal, only

some few small words. We were told she would not walk and she does! Parents have

been treating her with alternative ways, since Chi Kung (she began walking

there, during a session in Minneapolis/MN) and every other treatment we hear

about. From 2 years she`s been treated with Frequencies of Brilliance

(http://www.frequenciesofbrilliance.com/), and she`s improving. Perhaps you can

try to help your son with some alternative treatment also, together with meds

and see what happens. Her parents doesn`t like meds and have decided to treat

her another way. She also uses homeopatic and phitotherapic meds (Indian

doctor).

Hope this can give you another way of help.

God bless your family.

a

To: polymicrogyria

From: catherine.jacobson@...

Date: Wed, 13 Apr 2011 16:31:58 +0000

Subject: Re: Did anyone ever try NO medications for seizures?

Thanks for your responses. Just to be clear, I would never take away his

medication cold turkey, or without the supervision of his neurologist. I think

we are seeing one of the best neurologists out there - Dr. ph Sullivan, the

head of the pediatric epilepsy unit at UCSF.

I'm just so incredibly frustrated with the medications. On top of not working to

stop the seizures, they've made Ben's life miserable. The side effects have

been, at various times in his short 2 year life: months of 3 hour-long

inconsolable crying jags, loss of appetite (which almost resulted in a feeding

tube because he became so thin), lethargy and loss of muscle coordination,

inability to focus his eyes (he looked like he was on speed), concerns about his

liver function.

To give you some background, I have a PhD in neuroscience and I understand what

these drugs do to the brain. Giving my baby all of these drug cocktails during

the first 2 years of his life has affected his development. I know that the

brain develops differently on drugs than not on drugs. To be sure, the same can

be said of the developing brain on seizures. But there seems to be no positive

payoff to subjecting him to the drugs. We have no choice regarding his PMG, but

I feel like I do have a choice in whether or not to use the drugs.

I need another alternative. What about VNS? I've read some posts here that talk

about VNS implants that DIDN'T work. Has anyone had a positive experience? I've

also heard that deep brain stimulation is undergoing clincial trials - has

anyone's doctor mentioned that? Is the anything else that I haven't heard of?

>

> Hi All,

> Our son has been on about 8 different anti-seizure medications since he was

3.5 months old (he's now almost 2). None have worked. All have come with various

negative side effects. I'm thinking of trying to just let him be. He's had such

a tough time on the medications - and continued to have seizures daily anyway -

why keep putting him through these trials? We are running out of medication

options anyway. So my question is, has anyone else ever tried a drug-free period

for their child? Of course I'm very afraid that the seizures could get worse.

He's currently on Lamictal, and having anywhere from 3-5 seizures a day. He

cries a lot on Lamictal and we can't figure out what is hurting him. So we feel

like the Lamictal is not worth it. Any thoughts?

> Thanks,

>

>